ABOUT.COM:AUTISM RESPONDS TO J.B. HANDLEY
We thought you'd like to drop in on this conversation between Generation Rescue Co-Founder and Age of Autism's Editor at Large J.B. Handley and Lisa Jo Rudy, Autism Guide on About.com.
Vaccines and Autism: My Response to J.B. Handley of Generation Rescue
"I was honored to receive a comment on yesterday's blog from J.B. Handley, co-founder of Generation Rescue -- the organization most active in the fight to "green" vaccines (by which I understand "make vaccines safer"). I'd like to respond to Mr. Handley, so am citing his comment in full HERE.
Please come back to comment on Age of Autism.
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"No child can learn to interact typically with anyone if he never has the opportunity to do so. And an infant or toddler whose life is made up entirely of behavioral and therapeutic interventions has virtually no opportunity to learn, explore or develop typically."
---
"Our intervention of choice was Floortime (along with others) -- and I am still a "floortime parent" all these years later. What I love most about the approach is that it is so close to natural play, and so supportive of parent/child bonding."
Lisa Rudy I do not understand what you are saying. Did you not say behavioral and therapeutic interventions alone do not allow for typical development.
Posted by: Helen | March 16, 2008 at 06:40 PM
"There *are* some kids out there that will NOT learn to typically interact with others no matter how many opportunities they have thrown their way. The reasons might be several, some of which are 1. too much sensory overload 2. developmentally not ready to do so 3. too much pain and 4. plain disinterest."
I absolutely agree! My son was one of them, though we met several autistic kids who were able to thrive without ABA or other intensive therapies when they were in small typical settings.
Our intervention of choice was Floortime (along with others) -- and I am still a "floortime parent" all these years later. What I love most about the approach is that it is so close to natural play, and so supportive of parent/child bonding.
Best,
Lisa (www.autism.about.com)
Posted by: Lisa Rudy | March 16, 2008 at 04:02 PM
Terri,
That was beautifully said. We were at that wall too and started RDI 9 months ago..it worked so well for us that I decided to embark on the training to be a certified RDI consultant so I can not only continue my work with my own daughter but help others as well. I am so glad to hear it is working well for you. I wish you continued success.
Posted by: Sonja Lopez | March 16, 2008 at 10:13 AM
Lisa Rudy says, ". . .for very young children who are considered "borderline" autistic (by which is meant verbal, engaged, but with "red flag" symptoms), 40 hours a week of 1:1 discrete trials, along with many additional hours of intensive intervention, may not be the best choice."
I agree.
While ABA has been extremely helpful to many children, and used to be pretty much the only behavioral therapy out there, there are options that are better--in my experience, and also backed up with some research now.
Two of these we personally used for our son, Noah: the Greenspan method (also known as floor time) and RDI (Relationship Development Intervention).
While Greenspan has been around for a while, and can be easily found by googling "Stanley Greenspan," many parents have still not heard of RDI.
We personally used this therapy for two years, with wonderful results.
Before RDI, things were going very well--the GFCF diet, the supplements, speech and sensory integration therapy, and then a year and a half of Greenspan--all had brought Noah back to us almost completely, but something was still "off," just not quite right.
RDI, unlike ABA, is scientifically based on typical development from infancy through early to mid-childhood. It helps fill in the developmental "gaps" (or the "core deficits") of autism, rather than just teaching specific scripts or behaviors; in particular, it's designed to foster emotional and social growth, areas that ABA doesn't really target.
More at www.rdiconnect.com.
I just thought it worth a mention, because we hit some kind of a wall, and biomedical treatment wasn't enough.
So many autistic kids. . .someone else will hit that wall tomorrow, and maybe they'll find their help here.
Posted by: Terri Lewis | March 15, 2008 at 09:38 PM
Here is my take on the comments about intervention. I believe that the bio-medical piece is critical...however, many do not have access to this avenue for many reasons...mostly lack of guidance, information, opportunity, and mindset to go down this road. It is hard (everything is hard) expensive (everything is expensive) and somewhat intimidating. I have tried ABA (was not for us), Floortime (loved it and stuck with it for 5 years) 4 different DANS (not all are good at what they do) Yasko (the best!) Tomatis (was both good and bad (we got language but also auditory sensitivity), and am currently at the Connections Center in Houston training to be an RDI therapist because I feel it has so much to offer to this community. I am hoping my 7 years of experience in so many modalities will hopefully give me additional insight in how to guide families in their path towards recovery. We are all families in crisis and we all need to find our way in this drive to recover the kids. I applaud any effort made towards helping them. What works for one may not work for another...the key is to recognize this and explore alternative methods. They may not all be effective but the point is if you are doing SOMETHING, you are moving the family towards a better place. You still have hope...these kids are so different and the level of family health is so different, I would hesitate to criticize any kind of intervention. Instead, I would look to help them determine if they are seeing results and perhaps educate and explore other things if they are ABLE to do so.
Posted by: Sonja Lopez | March 15, 2008 at 08:44 PM
"No child can learn to interact typically with anyone if he never has the opportunity to do so. And an infant or toddler whose life is made up entirely of behavioral and therapeutic interventions has virtually no opportunity to learn, explore or develop typically."
I feel I must respond to your statement above.
There *are* some kids out there that will NOT learn to typically interact with others no matter how many opportunities they have thrown their way. The reasons might be several, some of which are 1. too much sensory overload 2. developmentally not ready to do so 3. too much pain and 4. plain disinterest.
An infant whose life is made up of just behavioral and therapeutic interventions will never ever be able to do anything neurotypically UNTIL all the vaccine toxins are removed from his/ her body. The ones that do claim only behavioral interventions helped were undoubtedly either less affected, or their methylation kicked in and then they were able to detox effectively, naturally. You cannot achieve typical behaviors by mere exposure to typical peers, no matter how much of it you provide. You have to have basic fundamental development in place (or have minimal injury, looking at it from the other perspective) to be able to take off and sustain "NT like" behavior from the type of interaction that you describe. With this caveat in place *only*, would the exposure you describe be met with some success, not otherwise.
Posted by: Helen | March 15, 2008 at 03:14 PM
Please DO take a look at my letter in Harvard Mag. If you read it carefully, you'll see that the comments on this blog are not representative of what I wrote.
I never used the term "waste of time" to refer to any intervention. What I did say is that for very young children who are considered "borderline" autistic (by which is meant verbal, engaged, but with "red flag" symptoms), 40 hours a week of 1:1 discrete trials, along with many additional hours of intensive intervention, may not be the best choice.
No child can learn to interact typically with anyone if he never has the opportunity to do so. And an infant or toddler whose life is made up entirely of behavioral and therapeutic interventions has virtually no opportunity to learn, explore or develop typically.
It may become clear, as a child gets older, that he/she will not develop typically even with developmentally appropriate therapy. If such is the case, THERE IS TIME to implement ABA and other therapies. No window will slam shut in that child's face just because he/she turned 2, 3, 4, or even 10.
Thanks,
Lisa Rudy
www.autism.about.com
Posted by: Lisa Rudy | March 15, 2008 at 02:19 PM
FYI-They are censoring posts on that blog now and mischaracterizing JB's position. same old same old..
Posted by: A@T | March 14, 2008 at 03:19 PM
JB, I wouldn't take much that Lisa Jo Rudy says seriously. She is clearly not up-to-date on the latest research (or, as biomedmama7 comments, even the MSDS on thimerosal). In her letter to the editor of Harvard Magazine, LJR asserts that ABA and biomedical interventions are a waste of time for children with autism, since they could be spending their time socializing with other kids. Perhaps LJR is dreaming (because I'm sure moms of kids who stim in a corner know exactly how "social" their kids would be in a room with peers), or perhaps she hasn't read the Summer 2007 issue of the journal of the Council for Exceptional Children (http://www.cec.sped.org/AM/Template.cfm?Section=Home&Template=/MembersOnly.cfm&ContentID=8702), which shows the TREMENDOUS intellectual gains made by ASD children via ABA.
Here's the link (http://harvardmagazine.com/2008/03/cambridge-02138.html) to LJR's letter to the editor, in which she also calls chelation, HBOT, etc., a waste of time...
Posted by: Theresa | March 13, 2008 at 10:44 PM
I'm with Tanya. There was no good choice for me either, not having a child on the spectrum or with any other known vaccine damage.
By the way, while Generation Rescue and Dan Olmsted deserve full credit for doing independent research on vaccinated vs. never-vaccinated kids, I just want to point out that I have been calling for such studies since the late 1980s and wrote about it here: http://www.ageofautism.com/2007/12/seeking-the-tru.html
I forgot to mention in that column that I was one of two parents invited by the IOM to a Vaccine Safety Workshop (Kris Severyn being the other one, and she has a PhD in pharmacology) around 1994, after I testified. At the workshop, I kept bringing up the fact that such studies were needed OVER AND OVER AGAIN. They were sick of me by the end, I'm sure. A lot of good it did.
All the best,
Sandy
Posted by: Sandy Gottstein | March 13, 2008 at 05:38 PM
so anybody at all can vote "absolutely not" (as to whether vacciens cause autism), but only those who have a child with autism are allowed to vote "absolutely!"???? even the way the poll is worded reflects the attitude towards the issue. i had to vote "possibly" as I don't have a child with autism ( thank you to all of you who have been screaming about the connection for years. we heeded your warning and didn't vaccinate), but i am certainly on the "absolutely"(meaning "yes") end of the continium. shucks, should have voted "absolutely" regardless, since that is my position...
Posted by: Tanya | March 13, 2008 at 05:11 PM
Hi - just wanted to check in and thank you for your interest in my blog. I understand, of course, that Age of Autism is NOT an "agnostic" publication -- so appreciate readers' willingness to converse without rancor.
As an aside, I had created that "do vaccines cause autism?" poll about 2 years ago, and it faded into obscurity... I'm thrilled to see so many people making their thoughts known.
This is an important turning point for the autism community; I'm very hopeful that so much attention and interest from the general community will finally lead to solid research. I'm particularly hopeful that we will see the CDC take on the research GenRescue has suggested: comparing autism rates in vaccinated/unvaccinated populations. As you've said and shown -- how tough is that?!
Here's hoping.
Best,
Lisa Rudy
About.com Guide to Autism
www.autism.about.com
Posted by: Lisa Rudy | March 13, 2008 at 04:22 PM
"The truth is, I don't have a stand on this issue."
[snip]
"Most importantly, I'd like to know whether the disorder we call "autism" is actually a large collection of very different disorders that look similar. I often compare the symptoms of autism to a headache in this sense: headaches may feel similar, but they may be caused by anything from stress to a brain tumor."
Maybe Lisa Jo Rudy does NOT want to take a stand on the issue. In other words she wants to be like other reporters who throw in a bunch of quotes from different people and put it out there for everyone to draw their own conclusions. Well, at least she takes the time to collate information and put it in one place for everyone to read. This is "service" and must be recognized as such.
She further to want to know what *exactly* causes autism. Until that happens, she will NOT point the finger at vaccines in particular. Well, even if we were able to eventually point the finger at a specific vaccine, or two, it would still not do it for her. The ripple effect of even a single vaccine insult will look different for different folks - since each one of us is so unique. The world happens to be gray, not black and white like Lisa Rudy appears to want it. Unfortunately for her, and doubtless others "like her" out there.
Posted by: Gayatri | March 13, 2008 at 03:28 PM
Laura, I think that's a really good point. I recently was contacted to possibly write a piece for another publication. The editor told me that after reading all the stories and studies he was "agnostic" as to whether vaccines are implicated in autism. I just don't see how you can read that stuff and still be agnostic, but there is so much garbage out there, promoted by so many reputable people and organizations, that people have a hard time figuring it out. The coverage of the Poling case is a classic example -- I mean, the U.S. government says, vaccines caused this girl's autism and we owe her money. What could be simpler? Yet the media has been spun by the cdc etc. till its head is spinning and it can't figure out something as basic as this.
Posted by: Dan Olmsted | March 13, 2008 at 02:57 PM
As many of you know, I have been concerned about the issue of vaccines and all kinds of adverse outcomes for many years. I feared that it would take something happening to a lot of people for anything to change. Now that my fears have been realized, I fear that it has to happen to everyone before anything significant will happen. Let us do everything we can to NOT make it so.
Posted by: Sandy Gottstein | March 13, 2008 at 02:47 PM
Re: the fence-sitters: before I started "really" reading up on Autism, as a parent of a newly-diagnosed child, I would have been considered a fence-sitter, too! It's almost too hard to believe our government and trusted physicians would let this happen to our precious children. After reading "Evidence of Harm", I got off the fence and jumped down into the biomedical recovery field. I told my friends and family what I learned. However, many people (most people, I'd say) have not done the reading, or the research on Autism and vaccines, nor do they have friends and family in the biomedical field to help bring them down off the fence (or push them, as the case may be in some instances!). Some people have to be shown evidence over and over before they believe.
I think all of the coverage after the Poling case is a good start, but it's just that -- a start. There will continue to be fence-sitters, who don't know enough about the issue or want to jump on either side of the fence. Unfortunately, until Autism affects someone they know or love, they may not understand the importance of the issue or understand why we parents are so passionate about the vaccine-Autism connection.
Oh, and thanks for pointing out the poll -- I didn't see that the first time, either.
Posted by: Laura | March 13, 2008 at 01:46 PM
I'm sick of the fence sitting crowd. They accomplish nothing for our children.
After I voted-Here's what I posted there.
Written like a true politician. Wouldn't want to offend anyone by taking a stand would you. When your kid descends into autism after their vaccinations one tends to drop the PC bull***t AND TAKE A STAND! Your inability to form an opinion just doesn't speak well of you or what one may find at this site. As my great Aunt used to say- Poop-or get off the pot. JB Handley is a hero in my book-your just another politician.
Posted by: A@T | March 13, 2008 at 11:44 AM
I wonder when the link between autism/autism like symptoms and mercury became "less credible"? If anything, I would think the fact that, according to CBS News, at least 9 other cases (besides the Polings)have been settled by the vaccine court and we don't know much about them would preclude her from saying anything has less credibility. Mercury by it's very nature, either Ethyl or Methyl, makes it as much a suspect as the number of vaccines on a certain part of the population. I would think an autism guide would have this fundamental information in her files and notes.
Posted by: Harry Hofherr | March 13, 2008 at 11:36 AM
The results (so far) of this poll will get you feeling positive that we are being heard, and that there are many out there who are willing to listen and learn! Let's all get on there and vote!
Posted by: Jeanne | March 13, 2008 at 11:28 AM
Diane,
Thanks for the tip and the link! I missed it the first time around, and only read the main article!
I voted!
Let's get out there and vote!
And check the results, everybody!! Very, very encouraging. . .
Posted by: Terri Lewis | March 13, 2008 at 11:15 AM
I hope you all don't miss the link to vote on whether you believe vaccines cause autism. They need to hear form us!
http://autism.about.com/library/quiz/blvaccines.htm
Posted by: Diane Farrr | March 13, 2008 at 11:07 AM
Well, that didn't make me as angry as some things I have read...
I still find it mind-boggling that some people don't believe the material safety data sheets on Thimerosal. They state the dangers. The results have come to fruition in epidemic proportions.
Wishy-washiness is completely unacceptable when it comes to injecting babies, pregnant women, and people in general with known neurotoxins and known carcinogens.
Posted by: biomedmama7 | March 13, 2008 at 10:58 AM